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Report

The Health Status and Needs of Individuals with Mental Retardation

In recognition of the need to improve the quality of life of
individuals with mental retardation (MR), Special Olympics Inc.
(SOI) commissioned this report to examine the health needs of
children and adults with MR. The purpose of this report is
three-fold: 1) to identify the current health status and needs of
individuals with MR, 2) to identify services gaps in supporting
these needs and 3) to propose specific recommendations to address
the unmet health care needs of individuals with MR.

Early in the 20th century, individuals with MR were generally
isolated, rather than encouraged to lead fulfilling and healthy
lives (David, 1970; Rix, 1986, Campbell, 1999). The last 40 years,
however, have seen dramatic changes in sentiments regarding those
with MR, resulting in a turn in public policy towards an emphasis
on normalization and inclusion (Rowitz, 1992; Kauffman and
Hallahan, 1995; Parmenter, 1999). Other developed countries, such
as Canada, the United Kingdom (U.K.), the Scandinavian countries
and Australia, have seen similar movements (Malin, 1981; Rowitz,
1990; Parmenter, 1999).

As a result of these changes in developed countries, much debate
and research has focused on the prevention of MR,
deinstitutionalization, and the education and employment of
individuals with MR (Tizard, 1971; Clarke, 1991; Anderson et al.,
1998). In the U.S., these themes are reflected in court cases,
legislative actions and federal initiatives, including Wyatt v.
Stickney (1972), Public Law 94-142 and its successor, the
Individuals with Disabilities Education Act (IDEA), the Americans
with Disabilities Act (1990) and reports by the President's
Committee on Mental Retardation (Anderson et al., 1998). Globally,
a variety of international organizations, such as the International
Association of Scientific Studies on Intellectual Disability, have
been developed to support and study both the prevention of MR and
the public education concerning individuals with MR (Clarke, 1991).
The health status and health service needs of individuals with MR,
however, have received little attention over the past four
decades.

This lack of attention to health status is surprising, particularly
in light of the tremendous gains in life expectancy which have
resulted from medical and public health advances. The life
expectancy of individuals in the U.S. increased 27.26 years between
1900 and 1990 (NCHS, 1999), and in 1997, the average life
expectancy was 76.5 years (Anderson, 1999). Similarly, the life
expectancy for individuals in Western Europe increased in the past
century, resulting in a current average life expectancy of 74.0
years (Population Division, 1998). Increased longevity is evident
not only in the general population, but also among individuals with
MR (Rowitz, 1992; Janicki and Breitenbach, 2000). Currently, the
average life expectancy of older adults with MR is 66.1 years, but
younger adults with MR are expected to live as long as their peers
without MR (Janicki et al., 1999). With improved assistive
technology and effective public health programs that control most
infectious diseases, not only are individuals with mild MR living
longer but some individuals with more severe MR also have increased
life expectancies (Eyman et al., 1988). As a result, these
individuals have recently been faced with the same chronic
diseases, including cardiovascular disease, cancer and diabetes,
which confront the general adult population (Moss and Turner, 1995
in Barr et al., 1999).

Although effective health prevention strategies and treatments
exist for many diseases (Bunker et al., 1995; U.S. Preventive
Services Task Force, 1996), not everyone benefits equally from
these medical interventions. The poor, minorities and the socially
disadvantaged disproportionately have poor health outcomes and lack
access to adequate health care services (Hertzman et al, 1994).
Individuals with MR are particularly vulnerable to having unmet
health care needs, as they are faced with many challenges in
understanding and maintaining their health (President's Committee
on Mental Retardation, 1999). Individuals with MR may have
difficulties understanding the effects of behavior on health, the
risks and benefits of medical treatment, and the process of
accessing appropriate and necessary health services (Barr et al,
1999; President's Committee on Mental Retardation, 1999). In
addition, when health care services are utilized by this
population, health providers may have difficulties recognizing and
treating various diseases, obtaining accurate medical histories and
communicating with patients who have cognitive and language
disabilities (Schor et al., 1981; Minihan and Dean, 1990; Lennox et
al., 1997)

The lack of access to appropriate health care services also may be
a relatively new problem for individuals with MR, resulting, at
least in part, from the deinstitutionalization of the 1970s and
1980s. Between 1967 and 1997, as individuals with MR were
mainstreamed into the community, there was a 71% reduction in the
number of individuals in state MR/developmental disability
facilities (Anderson et al., 1998). Trends of declining populations
in MR facilities also are evident in other developed countries,
such as Great Britain, where there was a 36% reduction in the
number of individuals in long-stay hospitals between 1980 and 1990
(Hart, 1998). As a result of deinstitutionalization, all but the
most severely disabled individuals with MR are expected to function
in the community environment. Many of these individuals can and do
achieve levels of functioning that were not previously thought
possible (President's Committee on Mental Retardation, 1999). Not
all, however, have their health care needs adequately addressed in
the community, due to a limited availability of community resources
and a lack of access to both knowledgeable care providers and a
continuity of care (Savino et al., 1973; Saenger et al., 1979;
Newacheck et al., 2000). In addition, the recent increase in
managed care, and its emphasis on cost-containment, may exaggerate
the impact that poor access to quality medical care has on this
population (Kastner, 1991; Department of Health, 1995 in Jones and
Kerr, 1997, President's Committee on Mental Retardation, 1999). As
a result, unmet health care needs may be an unintended consequence
of deinstitutionalization. Although controversy remains regarding
the quality of care received in institutions (Landesman and
Butterfield, 1987; Lowe et al., 1995), individuals in residential
centers were at least likely to have a usual source of care and be
seen by providers experienced in the treatment of individuals with
MR (Durkin, 1996).

Consequently, to develop a coherent set of recommendations for the
improvement of the health of individuals with MR, a thorough review
of the literature on the current health status of those with MR was
commissioned by SOI. In preparation for this report, several steps
were taken to ensure a thorough review of academic and public
policy documents. Researchers searched Medline and PsycInfo for
peer-reviewed articles on the physical, mental, dental and ocular
health of people with MR, as well as the availability and
accessibility of health care services for these individuals. Many
of these studies utilized administrative data accessed from service
delivery databases. In addition, publications and reports were
obtained from national and international organizations focusing on
MR, including the American Association for Mental Retardation
(AAMR), The Arc of the United States, and the International
Association for the Scientific Study of the Intellectual
Disabilities (IASSID). Based on a search of GPO Access and the
Internet, government documents that relate to the health and health
service use of individuals with MR also were obtained. Further,
individuals from several federal agencies (including the Centers
for Disease Control and Prevention, the National Council on
Disability, the President's Committee on Mental Retardation, the
U.S. Bureau of Census and the U.S. Department of Health and Human
Services) were contacted and interviewed. Although numerous
articles exist regarding the health status and needs of individuals
with MR, not all are scientificially rigorous or pertinent to this
manuscript. Therefore, while approximately 1,100 articles were
considered, only 548 were admitted into this review.

Individuals from academic institutions and those involved in
programs for individuals with MR through SOI, including Drs. Paul
Berman, Sandra Block, Steve Corbin, Matthew Janicki, Steven P.
Perlman, and H. Barry Waldman, also provided additional
information. National U.S. datasets, including the National Health
Interview Survey (NHIS), the National Health Expenditure Survey and
the Survey of Income and Program Participation, also were reviewed
to determine the availability of data related to individuals with
MR.

Following a review of the definition and prevalence of MR, this
report examines the physical, ocular, mental and dental health
needs of individuals with MR. Next, the health care services
available and accessible to this population are discussed. The
report concludes with a list of recommendations, proposed to
improve the health of individuals with MR.

* In 2004, Special Olympics updated its official terminology
from "mental retardation" to "intellectual disabilities" -
previously the term "mental retardation" was used throughout the
Special Olympics movement because of its specific meaning in
clinical and academic settings. Other terminology - including
cognitive delay, intellectual disabilities, intellectual handicaps,
learning disability, mental disabilities and mental handicaps - is
used around the world

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